Register

Patient's First Name

Patient's Middle Name

Patients Last Name

Is this the primary contact?

Alternate Contact Full Name

Alternate Contact Phone

Address

City

State

Zip

Country

Email

Home Phone

Cell Phone

Other Phone

Birthdate (mm/dd/yyyy)

What Race are you?

If other:

Gender

Which hand were you born to write with?

Do you have any relatives with Dystonia?

If Yes, what is their relationship to you

Would they consider joining our registry?

What year did your Dystonia symptoms begin? (yyyy)

At what age were you when the Dystonia symptoms began?

Where were the first symptoms? (Check all that apply)

right side of head above nose/ear
left side of head above nose/ear
right side of head below nose/ear
left side of head below nose/ear
neck
right hand
right arm
left hand
left arm
trunk
right leg
left leg
right foot
left foot

Have you been tested for DYT1 gene?

Who diagnosed you as positive?

Where were you diagnosed? (city / clinic or hospital)

Results of your DYT1 blood test were

What Form of Dystonia do you have (choose one)?

What Type of Dystonia do you have?

Location of your Dystonia?

Have you had Deep Brain Stimulation Surgery (DBS)?

If Yes, What date(s) (mm/dd/yyyy)

Where was DBS performed? (city / clinic or hospital)

What other treatments have you tried?

Do we have permission to contact for clinical trials?

What medications have you tried?

Artane (trihexyphenidyl)
Cogentin (benztropine)
Klonapin (clonazepam)
Lioresal (baclofen)
Parlodel (bromocriptine)
Sinemet (carbidopa/levodopa)
Valium (diazepam)
Zanaflex (tizanidine)
Tetrabenazine (also has a trade name now)
Carbidopa/Levodopa (Sinemet)